--a primary care physician would coordinate an individual's medical care, and s/he or his/her staff would make sure that all test results are collated and sent to the appropriate specialists--and s/he would make referrals to the specialists who would be most appropriate to provide opinion and insight on the individual's ongoing conditions.

Of course, it's far from a perfect world. Our medical systems are designed for the "easy" and "common" diagnosis, not the difficult. Far too many primary care physicians are overworked, and comparatively undercompensated, and don't have the time or inclination to do this. Even those that might have the inclination often find themselves running up to the limits of their knowledge for people like us. They are taught when hearing hoofbeats to think horses, not zebras; unfortunately, though neuropathy is common, when it comes to teasing out causes, a goodly number of us are not even zebras, but okapis.

This is even true of many specialists. Most endocrinologists, for example, can handle diabetics fairly well. But not many are that conversant with thyroid problems. And, if you're like me, and you have parathyroid issues . . .let's just say I'm glad I live in NYC, home to enough major research hospitals that there are some parathyroid experts out there (and some neuropathy experts)--people who actually conduct research in the field as well as have clinical practices. Of course, such people are usually found AT major research hospitals--"tertiary centers"--in urban areas. I am quite sympathetic to people who live in more rural areas, and the difficulties they have in finding doctors who can help them--it's part of the reason forums like these spring up and try to collect as much research info as they can (so people can take that in to doctors who are not as informed/involved).

Still, as has been mentioned, even if one is lucky enough to find a doctor willing to go the extra mile to investigate and coordinate, one is still ultimately responsible in these situations. Fortunately, with modern electronic information sources, one CAN become a reasonably good expert in one's condition, one can examine the possibilities using the tools available (such as this and the Liza Jane spreadsheets and the informational databases such as the Washington University Neuromuscular website--http://neuromuscular.wustl.edu/--), and one can use them to make suggestions to doctors about further avenues to explore. It may be more important in the end to have a doctor with whom one has a good rapport, who is willing to listen and to learn, than a doctor who is a world-class expert in one's condition. Sometimes, if you're in the right place and you get lucky, you get both in one package. But I'm the first to admit it's often a LONG search.